Aromatase Inhibitors: Did you decide to go on them or not?

My response is simple… you don’t need to know what you don’t need to know. Personally, three weeks out from a lumpectomy, margins clear, staged 1bNX, I’m looking forward to my radiation “rehearsal” and then (I hope) an accelerated partial breast course of treatment. My surgical teams calls my pathology report “fantastic,” and for now, that’s all I need to know.

I personally don't use these sites. Their results are very different from my genomic tests. I am 7 years out from diagnosis anyway!

lluna57 - Sorry you're having the side effects too. This isn't scientific in any way but it seems if many breast cancers are hormone positive in some way then our hormones have been working overtime and by adding a pill that alters that yet again....side effects would be the result. I hope that someday research will begin on the hormone imbalance issues that may contribute to breast and ovarian cancers and all the other related maladies some women suffer. My whole life has been the 'poster child' of imbalanced hormones. I enjoy studying breast cancer, the drugs and their effects but there isn't enough information available to the public or patients on exactly how the AI's function. Also, I haven't gotten any detailed information from my doctors. I wonder what other functions those AI's perform to stop cancer and why they create the sometimes dramatic effects in many women.
I too had bones of steel at one point....ha ha. Now they are more like bones of tin perhaps, but only due to my natural hormone decline. The AI's hasten that demise in some way by removing estrogen and progesterone I guess. I do hear that the pain we experience from them goes away once you stop the drugs but I have also had my doctors say they'll just give you another pill to remedy the bone loss..........it's a sort of cascade of pills.
We all have to choose between the cancer and the side effects. I'm hopeful that the next generation of breast cancer patients will have more and better options.
I have my six month check up this Tuesday and I will try to get more information on the AI's and long term effect and perhaps more about how they work. I will share anything new I learn. If anyone else on here has more information, please share. I know I'd benefit from a clearer understanding of the meds and long term effects.
Hugs!!

Yes that is the correct site. Oncologist use this site often. Anyone can use ONCOassist app. Go to Adjuvant tools and then go to breast cancer. Their results are pretty much the same as Predict.

@orsejr is this the Predict you were referring to?
https://breast.predict.nhs.uk/tool
I was looking at a different Predict tool! ONCOassist does say it is for professionals but maybe we can use it. I haven't downloaded it.

The Predict tool gives a much worse diagnosis for me than Oncotype, Breast Cancer Index or Prosigna Assay, which are all genomic tests using actual specimens from pathology. The Predict tool also shows marginal benefit from AI's, which also differs from the Oncotype but not the Breast Cancer Index.

The Predict tool goes by pathology results, which may be very different from the results from genomic tests. For instance, 30% of grade 3's have low Oncotypes.

I am glad I never look at the Predict tool. I have made it 7 years so far and an 83% chance of survival over 10 years, as the Predict tells me, would have caused a lot of anxiety.

In situ is Non-infiltrating , Non-invasive. If cancer cells are outside the ducts then by definition it’s not ‘in-situ’. I don’t believe cancer can be a ‘little’ bit invasive. I know we want to believe that but using incorrect diagnosis is not fair to patient. I k ow things aren’t clear cut but how far from the duct do the cancers have to be to be considered stage 1A? Just askin’ because this type of information gets generated and picked up by others & then becomes the way of thinking. It’s not helping the patient by sugar coating & I k ow we all want to hear the lesser diagnosis. God Bless you all.

I have always been an active, healthy person. On vacation last summer, I noticed a lump growing quickly. On my 63 birthday I was diagnosed with IDC, with skin invasion and lymph node involvement. I was immediately put on A1 (anastrozole). I was on it six months with the hopes of shrinking my 98% estrogen/96% progesterone/HERT2 negative diagnosis. Thankfully, this shrank my tumor by 1/3 and reduced the size of my lymph nodes. In May I had a partial lumpectomy (3mm tumor) and lymph node dissection (5/10 positive). I am in the middle of 28 radiation treatments with 5 boosters.

I hate AI therapy. I have gone from a person that didn’t take any medicine to a person that is taking multiple medicines. I stopped taking my anastrozole for two weeks before my surgery and went back on after surgery. I have hot flashes, feel joint pain, get tired more easily, and other side effects. My oncologist has guided me through dealing with them.

I DID see that pre-surgery AI therapy made a big difference in my surgery outcome. With 1/3 shrinkage pre-surgery, my surgery was less invasive than originally expected. I have also focused on eating a plant based diet and have lost twenty pounds. My oncologist has stressed the importance of doing weigh bearing exercises, walking, and being active. She has told me I would probably be taking AI for 10+ years. I can’t say I am happily embracing AI therapy, but for me, I feel like I have the choice of AI therapy or cancer. I have gone from stage 3C breast cancer to currently being cancer free. I am going to fight to keep that diagnosis with every tool possible.

Three months into AI therapy, I was wallowing in depression when I realized that I have grandchildren age 2 and 8 and want to make memories with them and my children for many more years. I have no guarantee that will be possible, but I decided I am personally doing everything within my power to make it possible. I am eating healthier than ever, being as active each day as I can be, and making more memories. I am taking anastrozole and actively dealing with any side effect that comes along. It’s not perfect; however, I still feel in control, and it is a good choice for me.

Everyone has a different journey and factors influencing each aspect. The survivors with side effects usually are the most verbal and influence others that are reading these posts for advice and reassurance. I have taken anastrozole for almost a year and have had side effects. BUT, I dealing with whatever comes my way because I have already seen the positive side of AI therapy and would rather take them than have a higher chance of going through cancer treatment again.

When I was first diagnosed about a year ago, I would read others comments and get very anxious. From what I read, I was very concerned about AI therapy and anastrozole in particular. It does have side effects just like any other medicine that is available. However, it has made a big difference through my cancer journey so far. For others making choices, make the best choice for YOU and not based on other’s experience.

I was told that a DCIS is invasive if cancer cells are not fully contained within the milk duct. But contained within the immediate area. I could have that wrong as, admittedly, the few weeks when the cancer was discovered and excised are a blur that led me reading medical studies and falling down repeater rabbit holes on Google Scholar. 😏

lluna57 - Sorry you're having the side effects too. This isn't scientific in any way but it seems if many breast cancers are hormone positive in some way then our hormones have been working overtime and by adding a pill that alters that yet again....side effects would be the result. I hope that someday research will begin on the hormone imbalance issues that may contribute to breast and ovarian cancers and all the other related maladies some women suffer. My whole life has been the 'poster child' of imbalanced hormones. I enjoy studying breast cancer, the drugs and their effects but there isn't enough information available to the public or patients on exactly how the AI's function. Also, I haven't gotten any detailed information from my doctors. I wonder what other functions those AI's perform to stop cancer and why they create the sometimes dramatic effects in many women.
I too had bones of steel at one point....ha ha. Now they are more like bones of tin perhaps, but only due to my natural hormone decline. The AI's hasten that demise in some way by removing estrogen and progesterone I guess. I do hear that the pain we experience from them goes away once you stop the drugs but I have also had my doctors say they'll just give you another pill to remedy the bone loss..........it's a sort of cascade of pills.
We all have to choose between the cancer and the side effects. I'm hopeful that the next generation of breast cancer patients will have more and better options.
I have my six month check up this Tuesday and I will try to get more information on the AI's and long term effect and perhaps more about how they work. I will share anything new I learn. If anyone else on here has more information, please share. I know I'd benefit from a clearer understanding of the meds and long term effects.
Hugs!!

Anyone can use Predict Breast tool. Just plug in the information asked . It’s quite simple. There’s also an ONCOassist
App that will give you information about how beneficial hormone therapy is at 5,10 and 15 years